Flares happen

This post is brought to you by Peanut, my faithful therapy rattie and napping partner as I find myself going splat a lot more with my 2nd worst flare since my initial 2012 onset “storm” or “cascade” that first got me diagnosed with Hypermobile type Ehlers-Danlos Syndrome. I’m strongly suspecting a hormonal cause to this one as my body is entering that biologically wonky phase known as peri-menopause in us females and I have begun to experience an increasing number of new changes and sensations I can’t explain easily otherwise. (Increasing hair loss, warm “flashes”, headaches, drier skin, more). Amazingly, I’m sleeping just fine despite most of this, probably thanks to Reiki.

I’m not worried, just annoyed. And presently a bit beset and disappointed as I was on such a roll for the last year that I was even contemplating ways to return to work next year. (I’m still contemplating ways to return to work, but leaving the time line a bit looser now… not knowing what tomorrow will bring, much less next month or next year.)

This latest flare came on with my latest period no surprise (sorry, but it’s my reality folks along with many others), but the intensity is what’s got me posting. I’ve been flaring mildly with the rise in progesterone ahead of every period for the last 3 years and just once or twice otherwise. But this time… I was simply lying down for a nap in bed when I got super sharp stabbing knife pains first in my left knee (no matter the position), then later my right knee, and last my right (and dominant) shoulder, arm and all my fingers. I hadn’t had these shooting pains at this level since 2012, and once again it took my breath away. Especially since I was not even moving, but just lying there napping with Peanut! Rather alarming and distressing. A lot of muscle cramps arose as tendons seemed to just give out all at once. Why can’t I be one of those people who just pop joints in and out without hurting?? I’ll trade you!

Needless to say the next time I went to move, it was much more painful and no surprise I was much weaker and more “wobbily” than I’d been in months. I went from being able to glide free hand on my hard wood floor in my leather Birkenstocks to needing two canes again for a while. I even dusted off my manual wheelchair and got ready to use it again if need be, I was that weak again. Thankfully at least this time I was equipped for the event, and just needing to refresh my bracing and support skills. I can still walk, just barely and very carefully – my formerly “good” left leg is now worse than my formerly “bad” right leg. Uhm, I need a leg to stand on, TYVM! And once again, I’m one of the lucky ones despite all this. (Many others have it much worse, I hate to say, beset with terrible dizzyness, nausea and weakness from POTS and others with regular full dislocations, terrific gastroparesis and much more.) I’ve also returned to propping my body into position in bed with extra pillows and blankets so I don’t sublux anything in my sleep. (I was actually able to stop doing that in the last year for a while for the win! Yes, it was glorious.)

My heart has started palpitating more again at random times and with almost any stress at all, and I’m fatiguing much easier than before this started last week. But aside from some increased dizzyness in the mornings I’m holding pretty steady in that department, thankfully. But I will never ever get used to the sound of my facial bones cracking as my head pressure ebbs and flows during such flares. (I’m referring to all the small bones that form the “mask” in the front around the nose used for Balkan style singing for those familiar). That is not something I could have ever thought of without experiencing it if I tried. Along with random bouts of radiculopathy and mild brachial and thoracic outlet syndrome… it’s a good thing I’ve been around this block before!

This just seems so surprising to me since I’ve been on a steady low-inflammation and nutrient dense diet for the last 2 years, and taking 6000IU/day Vitamin C for a few months now. (Up from 4000/day last year). Along with all the co-factors: calcium, magnesium and zinc, plus D3 and some CoQ10. I’ve also been juicing loads of kale with apple and kiwi despite some mild sensitivity – the benefits presently outweigh the costs for me, unlike many others with MCAD. I keep looking around for the person holding the voo doo doll of me full of pins, but have never found them. I think my tissues just periodically need to “give out” and take a break, and this is how they do it.

Flares can be triggered by a myriad of causes besides the aforementioned hormones, most often including viral illnesses, trauma of any kind (physical or emotional such as car accidents, death in the family, job loss, etc.), and stress. I’ve never been less stressed or sick in my life this last year, so that seems unlikely. In the end, sometimes flares just happen, and whatever the cause, we just have to ride them out patiently and gently, allowing our bodies the time to heal and re-integrate no matter what the world around us demands or expects. (You may need to radically alter any exercises or physical therapy you’ve been doing for the duration and wait until you start rebuilding again to resume.)

That’s what makes this condition so confounding for our families and doctors – we can literally be just fine one day, and wheelchair bound the next. But vice versa also – although I reached for the wheelchair and bed bound again last Friday, I was back sliding around (albeit with canes) the next day and returning it to its current status as storage for Peanut’s supplies. I’m still a bit shaky, and moving much slower again, but at least I’m not fully bed or wheelchair bound again.

I’ll take more naps as needed again though I admit I resent the enforced down time a bit. Thankfully Peanut is all too happy to help with that activity and sweetly holds my paw and licks my face any chance she gets. I’m positive I will rebuild again, but I hope I’ve incurred no new permanent damage, especially in my formerly good left leg. I’m wearing braces to that end for now. But I truly don’t know how long it will take before I return to my most recent prior “normal” (post 2012 storm), or if I ever will. But you can bet I will keep working to get there again, any way I can. After another nap…

As the title says, flares happen. It’s how we roll with them that matters. Rock (and roll as needed) on with as much joy as you can my beleaguered friends. One step, hour, and day at a time. I’ve definitely gotten further than I ever imagined in February 2012. Back at it…

3 Responses to Flares happen

Those hormones…I tell you. They seem to affect everything don’t they. I don’t have Ehlers-Danlos Syndrome but they definitely affect my pain tolerance and mood and anxiety and OCD. Maybe my TMJ too..I am PMS’ing right now so maybe that is one reason it is more painful the last few days.

Not to scare you, but don’t be so sure you don’t have EDS. 😉 I passed as an “orthotypical” for the first 44 years of my life, and wouldn’t have thought I did either. I’m now pretty sure I had a massive progesterone “flare” plus accumulated stress effects bring on my sudden onset “cascade” in late 2011 early 2012 that left me “clinical” enough to get diagnosed finally.

And while most will *not* have such a disabling onset flare (thankfully!) that’s why most also don’t get diagnosed – you guys are what I call the “walking wounded”. There’s not much else (frankly I know of nothing else) that can explain/cause TMJ along with anxiety and OCD (all highly comorbid with EDS) besides a connective tissue disorder causing joint laxity of some kind, if not EDS.

I also suspect I pulled the “short straw” and got it from both sides of my family now in 20/20 hindsight, so may have a “double allele” issue going on – I see signs in both of my late parents upon reflection. (My mom left when I was just 10, so I had to go back further in memory to recognize it in her.)

I really think of the most common form called Hypermobile EDS (aka HEDS) as being more of a spectrum than a B&W “all or nothing” disease as most geneticists would have us think now, lending to it being called Fibromyalgia a lot. (I think the other rare forms of EDS are more B&W in presentation however, as you either have the SNP or you don’t. We haven’t found the “single SNP” for HEDS besides two tiny rare subsets so far. I’m betting dark chocolate there are oodles more as per Sharon’s Theory.)

Along with other epigenetic factors and variability and Sharon’s theory, I find the following Chronic Constellation linked below (including many psychiatric and neuro-diverse issues like SPD and OCD, depression and anxiety) extremely common in our community. (My own family included! We had it all to various degrees in various ways in the family, just not always all in the same person.)

Toss in the Narcissistic Personality Disorder I find so common also (causing many family members to deny their suffering or invalidate yours) and few will either admit to or recognize the constellation. (My dad was very narcissistic, and refused to “see” anyone else’s suffering – a common experience in our families we find.)

Think bigger picture, include neurodiversity, mood disorders, and behavioral issues and sensitivities (all common in subclinical Aspergers), and pull back your view to a higher family level to see it. Chances are you do know someone who has it if not yourself: